I am so confused!

Morning all and let me start out wishing everyone a pain-free, happy day!

Okay, well I had my 2nd opinion appt with a NS on Tuesday. This doctor actually explained things and even brought my films up so he could go over them with me. But, it seems I'm back to the beginning again. He showed me my 3 mm herniation, but point blank told me he doesn't define Chiari as a problem until it reaches at least 5 mm AND he showed me that I didn't have any pressure on my C-spine area. He told me I had migraines, even with my 2 pages of symptoms (some of which I've never heard of being migraine symptoms) and that I should go back to my PCM and *maybe* another NL, but I certainly wasn't a surgeon's patient. Well, great, no one wants to hear they have to have surgery, but I am clearly not just a migraine patient. I have to say I did walk out of there feeling validated...other specialists said the herniation didn't even exist. I now can say I have been told and shown it's there. But, what do I do now? I have an appt with my primary on Friday morning, but I've already been sent to 1 NL and 2 NS, I'm not sure if I can get approval for much more.

I really overdid it on Sunday & Monday...ya know laundry, grocery shopping, vaccuming the house...and I am still paying for it today. The pain is horrible and there is nothing touching it. So, just a few questions:

If I don't have any pressure on my c spine, am I just a migraine patient?

Why can't doctors look past the headache?

What do I do now, treat symptoms for now and see if things get worse or keep insisting on finding a Chiari dr?

I just don't know where to go from here...I'm exhausted!


Hi Kellie...

I can understand completely your frustrations and it get to ya after a while.

Pls forgive me if you already mentioned this b4...But I have a question..Have you had the flow study done..CINE MRI??

Many here do the wait and see approach..and tx the symptoms with medications.

before I was properly Dx'd I was given many meds to deal with the many issues...I personally got no help from the NL's I saw...My primary handles my pain management meds ..then ..thank God..my primary told me to see the Chief NS in the state where I was living at the time.

I did do that...I did not do it sooner b/c all the NL's were telling me Chiari was not causing these problems!! They all said b/c my herniation was "only 5mm" it would not be causing such problems.

When was your last regular MRI done??

We are here for you..let us know how you are.




I have not had a CINE mri done. Would the NS have seen something on my other mri’s to make having the CINE necessary? I guess what I’m asking is since he saw no pressure on my actual spine, would that mean there wouldn’t be csf flow issues? Does that make any sense lol? My recent mri’s were done just 2 months ago, no change in the herniation since last year, roughly same time of year.


I had a go around with NL's over the CINE being done...the NL was saying he could tell that my flow was just fine from the regular MRI....when I asked why then is there even such a test as the CINE if a regular MRI tells all????? He did not have an answer!!!

This is only my 3 cents.....I would push hard for the CINE...my herniation was only 5mm...I did get a CINE which should that I had 'diminished CSF flow"..cannot remember where the area was....but when I told the NS that the NL said I did not need a CINE b/c he could tell by the 'static MRI" my NS actually laughed and said something like..."WOW....He is AMAZING!!!"...he said this sarcastically...of course.

Do you have a good relationship with your primary?? I ask b/c ususally the primary doesn't want to order expensive tests...but..he/she may order it for you so you don't have to waste more time....

Hi Kellie

I'm sorry, I understand your frustration right now. It sucks, totally freakin sucks. :(

Thanks, Sue. It really does!

Lori, I can’t believe how arrogant some of these drs are! Good for you, standing up for yourself and asking those questions a lot of people (meaning me) are afraid to ask. I do have a good relationship with my primary Dr. He has been very proactive, so I am going to keep my fingers crossed he’ll continue to be so.

The dx of Chiari Malformation is no longer based purely on herniation. The herniation length is not a basis for severity of your condition. There are many things to look at when the dx of CM has been made. And I'm not sure about the current state of CINE MRI technology but last I checked, it is not something you just request, it should be requested by a Chiari specialist. Cholmee, if you have any MRI pictures you can upload I would be happy to give you an opinion. I understand how you feel... yes treat your symptoms for now because this will be a bit of a journey, but also be aware that symptoms may change and you will need a doctor who understands you and what you are going through so that your symptoms are addressed correctly. For example, I was taking Xanax for the past 5+ years and then I started getting panic attacks last month so my doctor promptly switched me to Klonopin and the panic attacks have gone away completely. As for the migraines, for Chiari sufferers, this has everything to do with posture and what you do with your neck. Be careful with your neck and spine, like don't sit in weird positions but also don't try and force "good posture." If your MRI looks anything like mine I could give you a lot more advice on this. Your real next step is to see a CM specialist. There are many lists online so hopefully there is one not too far away from you. Hope this helps <3

Thanks, Bill! I do have my MRI's on discs, but I'll have to figure out how to upload them. I'd appreciate any and all BTDT experiences and opinions. I have also noticed my anxiety has skyrocketed in the last 3-4 months. I had panic attacks , then was given zoloft, but now they're back and more frequent than ever. I'm thinking it's the stress of all this, but it's still something I'll be discussing with my doc tomorrow.

I'll let you know when I figure out the MRI images. Again, thanks!


Keep in mind I know absolutely nothing at all, but I have read in my research that the size of the herniation doesn't define the intensity of the symptoms, people can have minor herniation and have significant symptoms and people can significant herianation and little to no symptoms. I see that are Chiare Clinics, maybe if you are having significant symptoms you can go and get a consultation at one. good luck